I haven’t blogged much over the last year, except to rage over my pet political issue, so imagine my surprise when I was invited to the Novartis Blogging Summit for TSC.
*Insert legal disclaimer here–While I was not paid for my time at the summit, my travel, hotel and food expenses were paid by Novartis.* They also gave me a box of kittens. No. I’m kidding. Only one lousy kitten.
Four other moms to kids with TSC were also there.
Tina of Captain Jacktastic, who I initially met around the time I started this blog through WordPress and later Facebook.
Heather who has written several pieces for Huffington Post, and I met for the first time last year in DC during the TS Alliance’s March on the Hill to continue funding for the Tuberous Sclerosis Complex Research Project.
Laurisa of Land of La, who was one of my early stalking victims when I was finally able to do TSC research for more than two minutes at a time without “breathing” into a paper bag. And Stephanie of Lanier Landing, who was the only one I had really never had any social media contact with, but I had stumbled across her blog when seeking other TSC kids in Epidiolex trials. At the time, her son was the only one I knew of.
The day I left, Connor seemed to have a bit of cold and Chris thought he was coming down with it as well. This is called foreshadowing — but I’ll get into that later.
I was picked up at the Newark airport by a man holding a sign with my name. I am accustomed to such a lifestyle as I force my husband to stand in the driveway most days and greet me in this manner when I come home. It turned out Laurisa had shared my turbulent flight that wasn’t quite in a “luggage bins popping open” category, but definitely required gripping of the arm rests and the parents in front of me to intervene with their 10-year-old who was launching a panic. The driver whisked us to the Short Hills, New Jersey Hilton where I luxuriated briefly in the softest king bed ever then headed down to the hotel bar to meet the other ladies.
We had dinner with several Novartis employees and shared our stories so they could have insight on what it’s like to live day-to-day with TSC. For those that don’t know, Novartis produces Afinitor, a medication that can shrink certain types of tumors that occur in TSC. Connor, fortunately, does not have a need for this medication at this time, but it would be a likely course of treatment should he ever develop a SEGA in the brain or large AMLs in the kidneys.
It’s weird to sit and talk about your kid and TSC without having to give a bunch of background information, explaining what certain acronyms mean or why a particular medication might be preferable to another. They already know and they’ve already been there.
When dinner wrapped up at 8, we caught the train into NYC to meet another TSC mom who lives in the city.
Correction, four of us went. Tina’s no fool. She wasn’t about to let a king bed, personal hotel room and a long, luxurious shower without the door cracked listening for shenanigans pass her by.
We met fellow TSC mommy Naomi at Haymaker Bar, a few blocks from Grand Central Terminal, ordered drinks and appetizers and talked about some more acronyms that needed no defining.
Heather revealed that Times Square was on her bucket list and since I was pretty much intent on spending every minute I could squeeze out of this 24-hour trip in NYC, I was fully supportive of her checking that item off. We trekked through the tourist mecca, which was hopping on this Friday night. As we passed by the Disney store, we were drawn inside by the sheer number of people inside at midnight. Apparently a large number of tourists venture all the way to New York and decide, as one day rolls into the next, that they simply MUST HAVE AN ELSA DOLL RIGHT NOW. It was amazing. And a little sad. But mostly amazing.
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We caught the train back to Short Hills where we bonded further as we almost spent the night in the station. The hotel didn’t offer much hope of a taxi and their shuttle service had stopped. Our first Uber driver was too stupid to find the train station. No we are not shopping at Trader Joe’s at 2 am. The second one found us, but appeared to have only been a licensed driver for a day or two. At any rate, we made it back to the hotel where it took me another hour to fall asleep, still high off neon and LED lighting (did you know that the Times Square district is the only district with a requirement for businesses to have illuminated signs and that there is a minimum, rather than maximum, lighting requirement)?
The next day was filled with discussions of TSC, diagnoses and, most importantly, what kind of resources would we have liked to have had when we received the diagnosis. We spoke of the fear of what was out there on the Internet and at least one person had been told to stick to TSAlliance.org and not to Google. Period. Novartis unveiled some new informational pamphlets for our feedback and said they are revamping their informational site.
There were some other resources they want to be sure the TSC community is aware of.
The Afinitor $25 co-pay card. This only works with commercial insurance (not Medicaid). If your co-pay is more than $25, print this out and take it to the pharmacy.
Afinitrac. This support program offers financial and educational support, deals with your insurance and provides other resources. Please note they are only allowed to offer it to patients who are using Afinitor on-label. If you are using it off-label (meaning for something it has not been officially FDA-approved for yet, like seizures or cognition) they are prohibited from providing this support.
Turbo & Scott. Previously the story book about a kid named Scott who has TSC was only available online, but it is now in print. It goes into a lot of detail about TSC in more kid-friendly terms. It’s a bit complex for younger kids or kids who are cognitively affected, but for older kids, siblings, or friends, it can be a great resource. There is also a comic book about a teenage Scott on a quest to meet others with TSC.
I was not required to share these resources or blog about the summit in order to attend, but I wanted to make sure people know about these resources as for many of us, the use of Afinitor (Everolimus) could very well be on the table one day, if it isn’t already.
I’m sad to say that I had to leave just before we wrapped up to catch my flight so I didn’t get to spend more time with my mommies, but perhaps my suggestion, as I exited, to do this again in Vegas will be heeded by Novartis 😉
And so I headed home where I would soon learn that the cold was not a cold…but more about that in my next post. A full update on Connor to come and the reasons why I’ve dropped off the mommy blogging planet.
After an afternoon of exploring ruins, we got ready for the wedding which was held at the Porta Hotel in Antigua. Lili faced a major challenge in that she wanted a Catholic ceremony, but it was not being held in a church. Locating a priest that would perform it proved to be a challenge. Everything else was already in place and she had purchased a dress more than a year before, but she explained to me that in Guatemala it is considered strange to wear the wedding gown if you have a civil ceremony, rather than religious. Fortunately an old family friend turned priest was able to perform the ceremony.
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The next morning we miraculously rose early considering each table came equipped with bottles of rum and whisky. Semana Santa, or Holy Week, was approaching and we had learned that in the weeks leading up to it — Lent — there were processions on Sundays.
I had experienced Semana Santa in Spain several years ago. The processions were interesting, but after a solid week of trying to navigate around them to get anywhere in Sevilla (I was taking language courses for a couple months) it was wearing thin. I know I shouldn’t complain about getting first hand experience with an incredible cultural experience, but I need clear access to Zara and Promod at all times. Don’t you judge me! I was also late to class.
Our experience in Guatemala worked out perfectly. The insanity and deluge of Guatemalans and tourists from all over had not yet arrived in Antigua, but we still got to see the Catholic celebration. In fact, we got to see something even better — the preparations. The streets are prepared with beautiful alfombras, or carpets, of sawdust, flowers and pine straw before the processions arrive with the heavy floats carried on the shoulders of the men, or cucuruchos, who have been selected for this honor. Women in the procession are called Las Dolorosas.
From the cutting of flowers to the watering of pine straw to the use of power tools and stencils to lay colorful sawdust, it was incredible to see hours of work, faith and dedication put into making something beautiful that would be trampled out of existence when the procession passed by.
If you’ve been bypassing my other photo galleries, please look through this one. Photos don’t do it justice, but it was really incredible.
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Chris and I had lunch at La Antigua Vineria. The pizza was delish and authentic. To add to the ambience was a man — owner maybe? — watching an Italian news channel. Chris wasn’t able to enjoy it so much as his stomach was a little off.
We returned to the hotel so he could rest while I drank coffee and read. We ate dinner at the hotel again that night — this time with reservations so we were able to be seated outside.
Chris still wasn’t feeling great so he struggled to enjoy his risotto.
But we did have a lovely view of the small lap pool.
Asian pork ribs with soy sauce, ginger, star anise and sweet potato.
I wondered whether anyone ever really swam in it. Though pretty, it was literally a lap pool. Tables sat alongside it and a sign requested that guests refrain from swimming during restaurant hours. For my amusement, I considered swimming laps like an Olympic swimmer as it would inevitably lead to diners being splashed.
Chris’s stomach issues did not improve during the night. Just the opposite. I was on my own the next day for the chocolate tour at Choco Museo. I participated in the chocolate making workshop which takes you through the history of chocolate in Guatemala and the chocolate making process.
The first thing we made was chocolate tea from the shells of the cacao beans. Then we made spicy and bitter hot chocolate as the Mayans would have — sort of. They would actually put blood in it. I was taking the class with another couple and when the teacher asked the husband to prick his finger, she was so deadpan, I actually had a moment of panic in which I actually questioned the possibility that I wasn’t going to get any hot chocolate because some dude from Massachusetts was going to have to donate DNA. My chocolate lust has often been known to cloud my judgment and sense of reality. Instead we just used chili powder. We also stirred as the Mayans would have, pouring from jug to jug. One more thing I lack the coordination for as you can see from the progression of these photos.
Next we made hot chocolate as the Europeans adapted it — meaning sweeter. And we ended by making our own chocolates to take home. While my chocolates cooled and hardened in the fridge, I walked back to the hotel to check on Chris. He wasn’t much interested in getting out of bed, so I got some coffee and read a book on the patio until it was time to wander back into town and collect my chocolates. I did some last-day gift shopping as well, including a colorful hand-made wooden mixer truck for Connor.
I made one last sweep through the markets before grabbing some lunch at a Korean joint. Yes, I ate Korean while in Guatemala. What can I say? I didn’t plan it — it just popped up in front of me.
Who can say no to bibimbap?
As we left Antigua the next morning we saw our first clear shot of the volcano hovering above the town. It had been surrounded by clouds until that point, but the sun finally burned through. And then it was gone out of sight, our quest to get a picture unfulfilled.
We arrived at the airport only for me to become enraged that I was unable to take my big bag of tamales, chuchitos and salsa with me. In ‘Murica our signs just say no guns or explosives.
I burned through the last of our quetzales shoveling airport-hocked handicrafts into my bag.
Our final Guatemalan adventure was at takeoff. Just as the plane was nearly completely boarded, it was announced we had to get off as the airport had closed. This immediately triggered my anxiety. Airports don’t just close. Clearly there was a security issue and of course I was thinking of terrorism. Everyone began to file off and the flight attendants — who look nothing like the dolls Delta hocks —
were clearly unsure how to proceed. They began checking boarding passes, then taking them, then returning them and checking them again. We were alerted that the airport had closed due to a security issue on the other side. Someone somewhere made the call that our flight could go, but it had to be ASAP or we would be stuck. So everyone filed back on and we were cleared for takeoff. This is the kind of stuff that rattles me and it happened to be the same day as the Germanwings crash. Had I known about that at the time, I told Chris he’d probably still be clutching his stomach in Central America.
But the flight back to Atlanta was uneventful.
“Why does coming home make you so cranky?” Chris asked me as my mood had soured quickly upon landing.
Chris and I woke the next morning, still slightly rattled from the robbery, but still excited for the day’s activities. After I massaged the bruise developing on my butt from landing in the street, we headed to the dining room for a Guatemalan breakfast, which was included with our room.
My favorite thing, besides the coffee of course, was the chuchito — corn dough, meat and tomato salsa wrapped in a corn husk.
Then we headed over to the other hotel to meet Gaby and David, friends from back home that I met through Lili. We were booked for the coffee tour and zip lining through Finca Filadelfia. An adapted unimog truck picked everyone up at 10 and we rattled over the cobblestone streets of Antigua, frequently seeming like we would scrape other cars, but somehow squeezing through.
The zip line was first. This was my third time zip lining (previously in Costa Rica and North Georgia), but the first time I didn’t have to do my own braking as I approached the platform, which made it easier to focus on the views.
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We grabbed some lunch on the property afterward while waiting for the coffee tour to start. I was quite surprised by the coffee tour. I love coffee, but I can’t say I expected the tour to be as interesting as it was. I’ve been on a few winery tours to learn about my other beloved beverage, but tend to lose interest after gazing at a couple of oak barrels — take me to the tasting! But coffee was actually much more interesting to me. The guide took us out on the property and we saw the process from start to finish. I was surprised to learn that while most countries can just grow the Arabica coffee plant, Guatemalan soil isn’t well suited. They graft the more resilient roots of a bitter robusta coffee plant to the tastier Arabica tops.
We wandered through the plants and were allowed to pick some coffee beans right off the branches. There is a method to doing this without messing up the bean. Yes, I messed all mine up. We eventually worked our way through the drying, roasting and packaging, including the opportunity to wear hairnets. I suggested Chris wear two as a safety precaution.
Naturally this all ended with the sampling of an incredible cup of coffee. I took a couple of smooth enjoyable sips, but couldn’t resist dropping some sugar in when nobody was looking. I change for no one.
Thousands and thousand of coffee beans drying in the sun — such beauty.
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I snapped a couple photos of some local girls collecting and shelling beans.
We returned to town as the wedding rehearsal finished, grabbing a drink in the hotel lobby. Did I manage to talk Chris into dinner out? That would be a hell no. But we did have a fabulous meal at our hotel where I dined on the penne pesto picante with shrimp kebab.
The next day was the wedding, so we spent the afternoon exploring the many ruins in Antigua. An earthquake devastated the city in 1773, ending its reign as capital. Some of the must-see sites include Casa Santa Domingo, the cathedral of San Jose, Iglesia y Convento de las Capuchinas and catedral de Santiago. This list is a pretty good compilation of things to see.
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My next post will cover the rest of the trip, but for now I leave you with this image taken at Iglesia de San Francisco. It really made me appreciate modern day access to the epidural.
It was more than a year ago that Chris and I were having lunch at Mac McGee’s in Historic Roswell and the topic of Lili and George came up. Lili is a good friend that moved to Barcelona back in 2008, and in 2011, Chris and I had met her and her Dutch boyfriend George in Florence, Italy for two-weeks of stuffing our faces with the best food on Earth. We wondered if there might be an engagement any time soon. Twenty minutes later on the drive home, I received a text that George popped the question while they were visiting her family in Guatemala.
Since Lili is originally from Guatemala City, I finally got to dust off my passport which has sat lonely and unused in the fireproof safe since Connor was born.
We flew Delta direct from Atlanta to Guatemala City, meeting up with Angel, another old friend who was connecting from Florida. Chris and I shared our row with a Guatemalan that hadn’t been home for 10 years. A casual business or pleasure question revealed that his daughter had paid for his trip because he had been battling depression over a job loss. He was surprising his family who had no idea he was coming, as well as an online girlfriend he’d never met. I really hope that went well — especially the girlfriend part. He was texting before we hit the ground and she told him she had a “weird feeling.” “Premonition?” I joked. I hope that turned into a positive feeling whenever he dropped it on her that he was about to show up. Very nice guy…just not the conversation you expect when being polite. Angel, on the other hand, had a whole row to herself and sprawled out unconscious.
Lili had booked us transportation to Antigua, so the car met us outside baggage claim to make the roughly 45-minute trip.
I booked five nights at Panza Verde Hotel in Antigua, Guatemala, just around the corner from the hotel where Lili was staying and having her wedding. I was enamored by the pictures on their website and I wasn’t disappointed. Especially when they put a fresh, fruity welcome drink in my hand. I was very pleased with our stay. One particular woman that worked the desk was especially attentive to our questions and booking our reservations. Our only somewhat negative experience was when we decided to eat dinner at our hotel last minute. We knew we didn’t have reservations, but as all the outdoor seating was available, and it was early by latin standards, we hoped we’d be able to be seated. A man was working the desk and his manner left something to be desired. Since we did not have reservations, we could only eat inside. We accepted that expecting the tables must be set to fill soon. But when we finished our meal, they still sat empty and didn’t fill until later in the evening. His manner left me with a bad taste and the feeling that he was teaching us a lesson for not planning ahead. Granted, I will say I have never worked in a restaurant and there may be insider info I don’t know to the logistics of running one, but it rubbed me the wrong way. But aside from him, I recommend a stay there.
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Chris and I set out to explore. The first day was pretty casual…just walking the streets until we ran into Lili.
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On recommendation from Lili’s brother, we stopped for a bite at Restaurante Mono Loco. We ordered nachos — to share, thankfully — since the plate was as big as my head x 3. I also developed an affinity for Gallo Guatemalan beer, which is available in the States as Famosa.
We then returned to the hotel to sprawl out and rest before meeting the group for drinks at Lili’s hotel.
At this point, I should probably backtrack a little. Traveling to places like Guatemala, Cambodia, Thailand, etc. is my style. I love Europe and I have done a lot of traveling there, but it is definitely more in Chris’ comfort zone. Had it not been for the wedding, I’m not sure I could have sold Chris on the idea.
His primary concern was safety. Stuff happens everywhere, but he definitely was a little more concerned on this trip. Me, not so much. Safety should always be of concern, but I’ve been extraordinarily lucky in that I’ve never had anything stolen, and petty crime warnings for travelers persist anywhere you go. Unless there is a major concern for bodily harm, I accept it as the way things are.
The guidebook had warned about being out after dark. When the group decided to go get dinner after drinks, Chris was hesitant. We were still full from the nachos, but I wanted to go for at least one drink, then we could head back since we were tired anyway (suffering from toddler-lag if you will).
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As we headed back, passing through the square I even said to Chris, “See, it’s fine.”
Within 10 minutes, years of traveling luck ran out. I had switched from my usual duffel bag (as Chris calls my purses) to a small purse worn across my body. Everywhere I looked, people were carrying large bags. I even saw tourists toting around designer labels, which I wouldn’t do anywhere but home. Well, I mean, if I had any designer labels. We were cautious of other pedestrians, but as we reached a corner, I stepped to the edge to prepare to cross. Suddenly there was a car right in front of me, perhaps an inch from my body. There was this immense pressure pulling me that I couldn’t process. It wasn’t until I was l lying in the street that I realized the passenger had grabbed my purse at chest level and pulled until it broke, dragging me with them. Fortunately it snapped before I got dragged under the car or otherwise seriously hurt. As the proper smart phone addict that I am, I immediately patted my pocket and began stammering about how “at least they didn’t get my phone!”
He left nasty fingerprints all over my shirt. This photo doesn’t do it justice.
In fact, all they got was my driver’s license (I thought, well at least I can get a picture now that isn’t as bad as that one. I was wrong about that, I learned at the DMV upon my return), my ATM card, which was cancelled within 15 minutes, and my lip gloss (a**holes).
But the most significant thing they took from me was my ability to ever convince Chris to travel outside his comfort zone or think I’m right ever again.
We didn’t let that ruin the trip though. I just chalk it up to my luck running out. It was bound to happen someday — well, getting something stolen. I did not have plans to be dragged by some creep hanging out of a car, but at least I have a story. I’m just glad it wasn’t on one of my solo trips.
We gave him a playroom, and he acted like he’d been sentenced to Riker’s.
We still have a child named Connor, in case my lack of blogging made you think he had packed up and run off to Borneo as revenge for us regulating his iPad time.
Let’s back up to February when we heard a loud thump followed by crying from his room. We ran in to discover that we had a Defcon 1 situation and Connor had escaped the crib. He wasn’t so much hurt as I think he was surprised by the floor, so he transitioned to the toddler bed that week. I did not expect it to go well. We moved more toys into the room, added a gate to the door and removed all potentially dangerous and/or greasy objects from his drawers. The first night he cried and yelled for two hours and I had to rock him to sleep. Not because of the bed, but because baby gates have always inspired great rage in him.
But after that, piece of cake. He would actually get in bed and stay there. I was shocked. I had expected him to trash the room and pass out in various spots on the floor. Instead, he stays in bed until light begins to peek through in the morning, and then he’ll either go play or drag objects into bed with him. In the beginning I’d find him passed out in a sea of pants and diapers he’d dragged from the drawers (yeah, no idea) but he has since graduated to his puzzles and trucks. The transition has been incredibly easy as long as he has his Pillow Pet dog to shine on the ceiling.
Staring into is even better than watching the ceiling.
March was probably the busiest month we’ve ever had.
Washington D.C.
Chris and I joined other TS Alliance volunteers from around the country again this year to meet with our congressional representatives and senators on behalf of our state. I’m excited to say that the Alliance got the most signatures ever in support of the Tuberous Sclerosis Complex Research Program. Georgia Senator Johnny Isakson was one of the authors of the senate Dear Colleague letter, and in the House of Representatives from Georgia, both Rep. Hank Johnson and Rep. David Scott signed on in support again this year. We were fortunate that the meetings were set for Wednesday March 4 since a snowstorm blew in and shut down the government on Thursday. Despite the cold, Chris and I got a lot of sightseeing done. And I only busted my butt on the ice once.
Chinatown
With Rep. Barry Loudermilk
With Rep. Hank Johnson
At Fado
With Sen. David Perdue
Headed to the Jefferson Memorial
Chinatown
Boston
We flew home from D.C. on a Friday, picked up Connor from my parents and flew up to Boston on Sunday morning. I had booked an early flight since this was our last trip given Connor is aging out of the TSC study and I wanted to make the most of the day. I was not aware at the time of booking that we would be losing an hour of sleep thanks to Daylight Savings. We boarded our 7:30 flight, took off, and landed right back in Atlanta 10 minutes later due to an issue with the landing gear. I was tired and disinterested in dragging a sleeping toddler off the plane so my thought was, if we gotta land on it, let’s just do it in Boston. If it meant spending the day in the airport waiting for a flight we weren’t going, but crazily enough Delta had a plane ready immediately so off we went. Boston was still covered in several feet of snow from the big storms the previous month. Roads and sidewalks were cleared, but space was tight with the mountains of dirty snow and abandoned cups on each side of the sidewalks (because apparently trash melts too when thrown in a snowbank).
While we were there we scheduled Connor’s annual scans. He had a brain MRI and an ultrasound (the recently updated protocol recommends an MRI of everything, but I just couldn’t seem to get someone on the phone that would make that happen this time). Since kidney involvement is common, we prepared ourselves for the possibility that Connor would have some sort of involvement by now, even though his previous scans at birth and six months were clear. When the tech came back to take additional photos after showing the initial pictures to the doctor we were pretty sure we were right. Connor does now have signs of TSC in his kidneys–innumerable minuscule angiomyolipomas. They are not problematic or affecting his kidney function, so we will just continue to monitor for growth. Hopefully they will not ever require intervention.
Weirdly, though I prepared myself for changes in the kidneys, I did not expect any change in the brain. There is no rational reason for that, I just didn’t. Turns out that one of his SENs in the ventricle has grown from 5mm to 7mm. It does not require intervention at this time, but the doctor recommended a followup in six months to be safe, rather than waiting the usual year.
So, not the best news, but certainly not the worst, or anything too crazy for TSC.
My crowning achievement of the trip was while Connor was having his MRI. I fell asleep in the waiting room, and awoke to the nurse telling us we could come back and see him. I jumped up in a half-asleep state of confusion not realizing my leg was completely asleep. I mean absolutely 100 percent numb and unfunctional. I crashed to the floor drawing a gasp of horror from an onlooker. I tried to get up, but couldn’t. My leg could not support any weight whatsoever. I looked really cool, but seemed unhurt…until we flew home that night. Then began the first of several days of my ankle looking like this:
But I must reiterate — I looked really cool.
Katie Beckett and IEP
Upon return I dealt with the immediate turnaround of Connor’s Katie Beckett renewal paperwork. They give you like a whopping two weeks to get it done, plus it came while we were out of town and was due when we would be gone again. Thankfully, we had an easy renewal this year (assuming we get re-approved), requiring only some basic forms and not the common 10,000 pages of therapy notes.
Then we had Connor’s first IEP meeting since he’s aging out of Babies Can’t Wait. He will begin at the special needs preschool in April, attending Monday through Friday from 8 until 12. It went pretty well. Their goals were well in line with what we were looking for. He will receive 45 minutes of OT, 45 of PT and 60 of speech a week. Plus he will continue with private speech, OT, music and aquatic.
Connor’s 3rd Birthday Party
We celebrated Connor’s construction-themed birthday a week early since we needed to be out of town for a wedding on his actual birthday. He was very accommodating in that he doesn’t know what date it is anyway and never has objections to being given trucks on any given day. Rosie the dog donned her construction gear and I even tried my hand at amateur cake making:
A few days later Connor went to my parents and we went to Antigua, Guatemala to round out a whirlwind month…but that’s my next post. Stay tuned so I can get all Rick Steves on you.
It was a quiet, relaxing, long weekend in the North Georgia mountains minus the morning we woke up with a couple of surprise visitors in the room.
Chris was the first to drag himself out of bed and head to the bathroom. I heard him utter, “What is that?! Is that a scorpion?!” Haha. Chris is the boy who cried scorpion (and various other creepy crawlers) to scare me so I just said, “Yeah, right.” He continued to insist there was something in the bathtub, so I got up to look. I didn’t even make it to the door because right there in my path:
Okay, technically this is the one in the tub, but you get the idea.
Yes, right in the exact precise path I had used three times in the nearly pitch dark to use the bathroom throughout the night (I blame wine and my 30s). Thank God for my $2 Target flip flops. Sometime during the night a couple of scorpions showed up to party. I don’t CARE that the Internet insists Georgia scorpions aren’t deadly. There are certain things that should never be in a bedroom and scorpions are on the list, right after porcelain dolls and Robert Pattinson (sorry, I just don’t see it). I ended up discovering a couple dead scorpions between my nightstand and bed as well. So began the panicked gathering of items — including one toddler — and move from the bottom floor (selected for misguided idea that Connor might go to bed first ) to the top/third floor. A hefty climb for such creatures (I choose to believe). We then went through everything in our bags to ensure we had not picked up any stowaways. Chris, for perhaps the first time ever, had not completely repacked and closed his bag, something I always make fun of him for doing every night on any vacation anywhere in the world. He says he likes to be prepared for escape Jason Bourne-style. He claimed he skipped it this time because I always make fun of him, and now here he was checking for scorpions as a result of my ridicule.
But other than that little adventure with wildlife, it was a relaxing trip. I even managed to read an entire book in about a day and a half — something that I used to be able to do all the time, but can barely get through a chapter most of the time these days. I couldn’t believe how fast I tore through this book. I felt like my increasingly dysfunctional brain had woken up in the fresh mountain air. Okay, so it turned out at the end that I had downloaded a Young Adult novel. I knew it had won awards and was also being banned in several places, cementing my desire to read it. I just didn’t realize the places it was being banned were American school libraries. At any rate, The Absolutely True Diary of a Part-Time Indian by Sherman Alexie was pretty good.
I also discovered that Connor, who loves taking baths at home, isn’t down with large Jacuzzi-style tubs. He flipped out and refused to even let me set him down in it, so I had to bathe him in the sink as the regular tub was now hosting a scorpion.
Connor has really been making great progress lately. Some of the awesome things we’ve seen lately:
He’s very quick to respond to requests more frequently, like “let’s go upstairs,” “time to eat” or “show me______.”
He was able to squat down perfectly, pick up book and stand back up without any support from furniture.
He watched me demonstrate his bowling set and immediately helped me set the pins back up after ONE DEMONSTRATION!
He had taken his bib and put it on the couch. When I told him to come eat, he actually stopped, picked up the bib and brought it with him!
We are still waiting to hear from GW about including him in the Epidiolex trial. Argh. It’s been a month since additional paperwork was submitted.
Side note: I’ve previously posted about Accredo Pharmacy (Express Scripts) issues. A couple readers have contacted me about their ongoing issues and have subsequently started an FB group and petition. Please check out those links if you are a dissatisfied patient. While I do believe there are some employees working to help the situation, it appears they are the minority and way too many people are still fighting for their prescriptions. The change isn’t coming fast enough for people who are very sick and depend on these meds. If you are experiencing issues, please e-mail Jennifer Luddy at ExpressRxHelp@express-scripts.com.
It struck me recently that it has been 10 years since I was in Korea. No one our age should ever say the phrase ‘when I was in Korea’… a friend once said to me. Less humorous was the number of people who asked me whether I was in the north or south.
It seems pretty surreal looking back on it. I had some really great experiences, and some not so great. The job itself was ridiculous. I taught English of course, as most foreigners there do. All the foreigners I ever met in my seven months had one of three jobs. ESL teacher was by far the leader, followed by American military and a handful of engineers–I couldn’t tell you what any of them were engineering. The whole time, I only ever met two travelers. They were passing through Daegu and stood out to our teacher posse heading to Commune, a regular drinking spot, because of their giant backpacks. Korea tends to get dissed on the Asian backpacking trail.
I’ve been craving the street food and convenience store snacks a lot lately. I miss my little fish-shaped bread with –I don’t know–a sweet bean paste or something inside. And the convenience stores on every corner of Daegu had these little triangles of rice wrapped in seaweed with different flavors in the middle.
The air was disgusting. I think I coughed for the first month straight. A few weeks in, I went to the top of Apsan Mountain and could breathe again.
But there were coffee shops with luxurious seating everywhere so it was a worthwhile trade. Coffee ranks higher than oxygen for me. Now that is something Korea has down pat. Restaurants, bars and coffee shops didn’t fill themselves with wooden chairs. You didn’t count yourself lucky to have your request for a booth granted, like in America. Comfy couches were everywhere!
So were the obvious signs that copyright/trademark law didn’t apply. My knockoff Kate Spade bags, the Robert DeNiro Cafe and Titanic bar–yes, a bar covered in memorabilia from the film–were testament to that.
They also had honor bars. It’s quite possible that these are somewhere in America, but I have surely never encountered one. Tables had long ice buckets and you just took what you wanted and paid when you were done.
I was sick a lot as I had no immunity to Korean germs. And there were a lot more opportunities to pick up the germs. The PC bang, or internet cafes, for one. Everyone spent quite a bit of time there. You see, young children, the Internet, while not brand new, was fresh enough that instead of Facebook, people were signing up for this thing called Friendster, instead of attempting to express your self in 140 characters or less via Twitter, lots of people blogged, and getting e-mail was still a reason to get excited. I still hate Twitter, by the way. I spend the whole time trying to condense my sarcasm under the character limit. I knew I was doomed health wise when the paper cups at the school water cooler were confiscated because the kids liked to throw them all over the hall. They was replaced with a single communal cup. Maybe I could avoid one sniffling kid with pink eye, but not all of them.
Multiple generations all living together allowed some unique businesses to thrive as kids tried to escape their parents’ — and grandparents’– watchful eyes. I mean, Internet cafes aren’t exactly rare abroad, but Korea is a place where every third shop is full of preteen gamers. Or the DVD bang. This would never work in the States, but it was awesome there. You don’t simply rent a DVD in Korea, you rent a small room with plush couches where all your friends meet up to watch films. That was our Sunday night thing. Dinner and the DVD bang. It was pretty much the only night that didn’t revolve around drinking. This is where I developed my addiction to Asian Horror Films– Ju-On, Gin Gwai, Chakushin Ari and Ringu. Better known here as the American versions The Grudge, The Eye, One Missed Call and The Ring. FYI, the Asian version is better in all cases but The Ring. It’s old hat now, but back then, the Asian-inspired imagery of the long, dark hair obscuring the face of an evil woman approaching with erratic, jerky movements was the creepiest thing I’d ever seen. The only thing scarier was what might have previously occurred on the couches we were sitting on since Korean young couples used it as a place to get away from adult prying eyes.
Korea is a very homogenous society. Foreigners really stood out, at least away from certain sections of Seoul. I found myself exchanging the knowing “wassup head nod” when passing other foreigners. It was only a couple days before I walked past a kid who grabbed his mom, yelling, “Waygook! Waygook!” when I walked by. The kids were fascinated by my freckles and I was deemed some sort of (beloved) sun monster. They’d grab my arm and and turn it back and forth. The underside they proclaimed “good.” The top freckled side was “bad. Africa.”
The way Koreans interact with foreigners is quite different from how they interact with one another. But rules don’t apply to us. While introduction is a big deal amongst Koreans, we can be approached, asked a thousand questions and recruited for English practice. Sometimes this is a great way to make a Korean friend, and sometimes it’s just awkward, like when the heat in my apartment stopped working (which also controlled the water) and I had to shower at my gym in a big open room (It was winter and my employers were in no hurry to correct the issue). Please don’t play 20 Questions with me when we’re both naked.
I discovered the greatest food on Earth — Korean BBQ — while I was there. I also discovered the greatest/worst drink on Earth — soju.
My Korean co-workers seemed quite concerned about my weight. I wasn’t overweight, but they were certainly concerned about me becoming so. Concerns were expressed by a building manager that barely spoke English, but mustered up enough language to discuss my “healthy” appearance. “Healthy” didn’t seem to mean to him what it does to me. And another teacher eyed my instant coffee and snacks between classes, and declared that she was worried about me “fattening.”
I became a mini-celebrity for a brief time when a picture of my brother slipped out of a book and the students spotted it. He once bore a great resemblance to Harry Potter, glasses and all, and the kids were thrilled that I knew Harry personally. I think this is what led to my brother’s later adventures in facial hair. A few short years later, I would go pick up my brother on a trip home from his art school and would mistake him for a homeless man, which was preferable to a few years later when he shaved his head and looked like an extra from American History X.
I visited the DMZ, where people are very serious at ALL times. My friend Mieka and I made the mistake of laughing slightly when the guide told us how the north and south competed to have the tallest structure at the border. She spun towards and declared, “Don’t laugh! Watching!”
THAT is North Korea.The guard behind me is making sure I don’t walk through the wrong door to the North Korean side.Technically I’m standing in N. Korea here. I’m pretty sure he’ll be understanding if I get confused though…
Besides the job I was officially recruited for, I had a second side job that was actually not permitted by my visa, as did most teachers there. Almost everyone supplements their income with a second job tutoring, and no one is really clear on the consequences, so everyone pretends there aren’t any. I got hooked up with a job doing English lessons for kindergartens around the area. It was a pretty pointless program. It’s a big selling point for schools to offer English lessons, but they tend to be silly and infrequent. Since I worked afternoons, I’d get picked up on occasional mornings by one of the recruiters who would drive me to a kindergarten. Some I only ever went to once. Some once a month. One time I was hired to put on a show for parents’ day. That was the only time they brought someone in, which didn’t seem to be unusual. Then one day I was picked up to go to one of my regular schools, and when we arrived, there appeared to be someone of authority there looking into things. The recruiter hesitated, stopped me, and observed for a bit. Then we got back in the car and took off. His English wasn’t great, but the best I could gather is that perhaps it was a sweep of some sort for visa violations. And that was the end of my kindergarten days. By that point I already knew one teacher who was sitting in a Korean jail for signing for a package that contained marijuana sent by his brother in Canada. Okay, I don’t know if it would have been that dramatic, but no need to find out. Fortunately, he was able to avoid jail time and got deported instead.
My real job was an absurd blight on education. Many Korean kids attend hagwons for supplementary lessons in addition to regular school. English hagwons are a major employer of foreign English speakers. I’m not saying all are bad, but some are truly a joke. I worked for a large chain and we were there as marketing tools. Let me describe the training: there was none.
I got off a plane on a Friday night. I observed another untrained teacher playing Hangman with the students on Saturday afternoon. Monday I became expert Hangman teacher. And this was how the cycle went. More new teachers would arrive, observe other untrained teachers with no prior teaching experience and begin teaching. But, hey, our photos looked good in the newspaper ad. Eventually a “no Hangman” rule was passed. We had to stick purely to the in-house created textbooks. I wish smart phones and Instagram had been the thing so I could show you photos of these textbooks, but alas, at this point, digital cameras were still exciting (I was the only one still rocking film-I am always a good couple years behind on technology). But I will describe one of my favorite lessons to give you an idea of what we were dealing with. One of the middle school texts was called “English Through Cartoons,” and one of the lessons was called “The Keyhole.” The drawings consisted of a scantily clad woman with a large chest barely contained in her shirt sitting on a bed. A young boy has busted in, and she is upset that he didn’t knock. He informs her that it’s okay, he looked through the keyhole before he walked in on her. MUCH better than Hangman.
On Halloween one of the staff asked me to tell a scary story. He said he’d interpret it. I told him I wasn’t sure I knew any appropriate for elementary kids, so he had me tell him a story, which he then approved, and said he’d interpret. It’s that old story about the babysitter lying on the couch after the kids have gone to sleep and the dog is under the couch licking her hand. She goes upstairs to to check on the sound of dripping, and finds the dog decapitated and hanging. When she runs downstairs, she sees the escaped mental patient from the news under the couch. When I came home and got my master’s in education and started teaching, it occurred to me that telling that story here would probably land me in the administrator’s office. But in Korea, it sent two girls screaming out of the room and it was all good.
This kind of stuff wasn’t unique to my chain. This is from a friend of mine, Mieka, who worked at another major school:
Ahh the Flaming Children story . . . Like many of the English schools in Korea, Ding Ding Dang, the school I worked for, embraced all the North American holidays with vigor. So at the end of October we had Hallowe’en celebrations with costumes, candy and jack o’lanterns. We also had games and crafts and ended each party with a mummy wrapping competition. For six class sections this went off without a hitch. The pumpkins were displayed on the front desk and some enterprising Korean teacher decided not to waste the extra candles and set up the extra candles next to them for some mood lighting (can you see where this is going?). For the seventh and final Hallowe’en party, the “mummies” from the different classes were standing in front of jack o’lanterns, waiting to be judged. One of the boys stepped too close to the open flame of the extra candle and the toilet paper used as mummy wrapping caught fire. The girl next to him panicked and bumped into him and caught fire as well. Jonathan and Lee grabbed the kids to try stamp out the flames while I grabbed the nearest fire extinguisher to put out the fire. The kids were okay, their clothes protected them from the worst of it. And I had the most interesting story at the Commune that week. Oh and did I mention all this happened on my 26th birthday!?! I think the story may have become an urban legend among the foreign teachers in Korea but I can attest it is true!
Mieka’s school also had some questionable text books. Foreign teachers would often be hired to create these publications, and they liked to slip stuff in that might not set of the radar of administration, but the teachers thought were hilarious. Unlike me, Mieka took photos.
Exhibit 1
Exhibit 2
I was in the middle of a lesson one day and another teacher popped in and said, “Watch this!” He threw a handful of candy in the air and all the kids dive-bombed the floor like vultures. This was the work environment. And I didn’t really appreciate how insane it was until I started teaching for real.
The Americans and Canadians had it pretty easy, though. At least we weren’t in the same boat as the English, Irish, Australian and New Zealanders who were constantly informed that they weren’t speaking correctly.
But none of that silly work stuff mattered because this:
The last couple weeks have been rather exhausting in good ways and bad ways. Good = trip to Boston. Bad = corrupt housing market.
Might I start by saying I hate property appraisers? I think I said that in my last post. It is still true. Despite the fact the houses by the same builder with the same floor plan have recently sold around the $200k within walking distance, our appraisal at $185,000, $20k below the agreed upon sale price will stand. We were already taking a hit from what was paid. And despite our complete makeover of the lawn from dirt to gorgeous grass, the addition of granite in the bathrooms, a thorough de-brassing of fixtures, a new water heater and a new roof, it’s still worth $25k less than it was appraised for in 2007. So dear, dear appraisers, yes, we all know you were oh so shady in your role (I say role, as banks and irresponsible buyers should not go blameless) in helping destroy our economy, and I’m so glad that you can continue to screw up people’s lives by swinging to other end of the spectrum and undervaluing everyone’s properties, as you once over valued them to line your pockets. I despise you and your industry. You have undervalued our house and taken money from us that should be going towards my child’s needs. I wish upon you a lousy life.
Yes, we are going ahead with the move. It will hurt in the short term, but is best for the long-term. We had to heap much fertilizer on our money tree in the backyard to make it possible. Closing is in two weeks.
In brighter news, Connor is crawling like a fiend. He’s truly my child as he keeps making a move for the kitchen island wine rack and tries to steal one of my bottles. I couldn’t be prouder. He also knows that I have toys to sell stashed in the laundry room, and despite the nine kajillion toys strewn about the house, he wants the ones in the laundry room. Emma has nearly lost her tail twice in his deadly jaws. I’m desperately trying to make him understand that bathrooms are grody mcnasty and that he should not follow us in there.
We went to Boston last week for his third visit as part of the TSC study. He also had his annual MRI at Boston Children’s. Everything went smoothly, and I can see why Michael Jackson was hooked on propofol after an extensive period of time trying to wake Connor — not in a scary way, he just really wanted to keep sleeping. It’s waaaaaay better than my melatonin. We haven’t gotten the results yet. Hoping for no growth, of course.
Connor’s veins continue to be elusive, proving that it isn’t just Atlanta that can’t get a vein in this kid. He always leaves looking like a retired pin cushion.
We’ve pretty much walked all over Boston at this point, so we just revisited some favorite areas.
We watched Harvard’s sailing practice on the Charles River.
We played with ducks in the Gardens.We visited the only Curious George Store in the world at Harvard Square.Connor demonstrated that high chairs work best when you sit backward.He stole my bed.Plane watching at Boston Logan.
I love going to Boston. I actually think I could live there in spite of the cold. The only negative aspect of the trip was the idiotic TSA. I’ve actually been feeling more kindly toward this waste-of-taxpayer-money organization as having a kid has miraculously made flying easier in a way. We get to skip the security line in Atlanta, they do a quick, problem-free scan of his milk, food and meds as they are oversized liquids and we get to board first. I even get to bypass the full body scanner and walk through problem free. But this time, coming home, my sixth flight with Connor, suddenly things change. They pull his diaper bag as usual due to the liquids, but this time, because of them, she tells me one of his parents must submit to a full-body pat down, as well as have their personal bag searched. Chris is already on the bench putting his shoes on, so in complete surprise, I begrudgingly volunteer to do so. Two questions: 1. What the hell does having oversized baby liquids have to do with arbitrarily patting me down and searching my purse? 2. What is the point of letting the parents choose? If we are indeed carrying a bomb, obviously the one who isn’t wired up is going to volunteer. She informs me that if I get all his stuff in 4 oz containers, I can avoid this. Hey pharmacist, I’m gonna need all Connor’s meds in a series of 4 oz bottles, please, and make it snappy! I inform her that I have flown with him six times and this is a first. No response. So apparently bottles of Enfagrow in your bag = right of government agency to stick their hands up your crotch. And they wonder why we don’t thank them for their service to this country. That and the fact that they’ve never stopped an attempted terrorist attack. That’s the job of the other passengers on the plane.
Anyway, our plan to try name brand seizure meds in hopes of better control did not work. We are now weaning off Trileptal and moving on to Onfi. His seizures have been increasing, and though they are short and he recovers quickly, he drops suddenly. He’s face planted on the floor three times now. We have to stop these before he walks. Please let Onfi be the one.
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namely, Where was Cliff parking the mail truck when he went to Cheers? Having gone there on this trip, I’m not sure I buy that he was hanging out in a place that is so expensive to park.
At any rate, when I last left you I had gotten food poisoning in D.C. The next morning, Friday, I felt much better. No stomach pain, still off, but better. Once again I had cured myself in a day. And we wouldn’t even have to cancel the next day’s trip to Boston. Oh, oops. Fooled again, but went to Boston anyway. When I get to travel I can power through. Had we been at home, I’d have milked the bejesus out of the situation. But I lived. And lost a couple pounds.
This trip we extended for pleasure. We flew in Saturday, but weren’t needed by the study until Sunday night. We spent Saturday afternoon checking out Boston University since it was only a few blocks from our hotel. There was some sort of regional track meet going on and runners were there from several schools. In fact, some were staying in our hotel. Yeah, you know what’s coming. I officially crossed into “old.” I am no longer the one keeping people awake. I am now the one calling the front desk at 3 a.m. to report “those durn kids that just won’t keep it down.”
Sunday we went to check out Boston Common and the surrounding area. I was disappointed that all the water was drained and ruined my photo op. We came upon the cemetery where Paul Revere is buried. Too bad I’m not teaching anymore. Since for some reason the state of Georgia thinks he warrants six weeks worth of social studies unit (I’m not saying he isn’t history-worthy, just not six weeks worth), I could have used this photo when struggling for material, perhaps made up a story about digging him up at midnight and running through the streets screaming, “The zombies are coming!”
Most importantly, we went to Cheers so I could have a beer. I went to Boston when I was 16 and couldn’t drink. It felt so wrong to go to Cheers and not have a beer, so I finally fulfilled that ridiculous dream, in spite of my funky stomach.
When we had free time, we also checked out Chinatown, and we went to dinner at Ann Davison’s house, one of my former co-workers who moved to Boston last summer. This is the view about a block from her house:
Chinatown:
Back to the TSC study, which is the reason why we were up there–Sunday night (at 10:30!) we had to take him for an MRI. Since it’s for the study, it’s not sedated; it’s a sleep MRI. All my MRI knowledge comes from watching House. Remember those scenes? A person is in the tube and the doctors talk to him while he lays inside. Everyone shares deep thoughts, the doctors discover secrets about one another, and House has an unrelated epiphany and runs out. Turns out that television does not portray things very realistically. I wasn’t worried about getting him to sleep. That was a piece of cake. The problem was that since we had to stay in there with him, we were given ear plugs. Paranoid much? 45 minutes of whirring is gonna destroy my hearing? Please. Chris maybe. Took him three days to get his hearing back after I dragged him to Lady Gaga.
It turns out that an MRI doesn’t whir. It’s more of a cringe-inducing series of mechanical groans that reminded me of Ripley trying to blow up the spaceship in Aliens. So he woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to…well, you get the idea. Eventually we called it quits and decided we would be opting out of this portion of the study. I want to help, but you’ve got to be kidding me. One of the techs even crawled in there with him at one point to calm him.
We also had two days of testing, some of which were the same as what he did on his first trip. It was really great to watch because he has improved so much since last time. Plus, the last time he had two seizures, so he wasn’t to into it. We still haven’t seen a seizure since February 10! He was engaged, cooperative, and the difference was awesome. The only problem he really seemed to be having with the testing was that sometimes he was too busy flirting with the ladies administering it to do it. I looked forward to hearing how the scores would show how much better he was. Finally, the big reveal! And the scores show….regression! Regression? WTF. How is that possible? Here is why. The Mullen Scale is bullshit. Last time we were there, due to the seizures he got sleepy and some had to be completed by parent report. They no longer do that, which is understandable as I see how it could inflate scores. So this time, it had to be done in front of them. Yet, he can do more! How did he regress? Last time he could barely sit, and this time he sat the whole time! Well, the way they score it is that there are a series of things he must do to be scored on. If he doesn’t perform one item, they stop. So when they got to the item where he is supposed to lay on his stomach and reach for an item, he insisted on just rolling over every time because he hates being on his stomach. Therefore, he didn’t get credit for that, nor did he get credit for the following item. SITTING. I don’t know what items came after that, but he didn’t get a chance at those either. So he was rated at a 4-month level in motor skills. He is delayed, but he is NOT at a four-month level. So clearly this test isn’t going to be particularly helpful for our personal purposes. I’m happy to have him in the study and I like the ladies in charge, but the Mullen and I are not friends.
Connor’s physical therapist about flipped when I shared this with her. The Battelle test she uses on him requires three fails in a row in an area before you move on to a different section, not one. So while I had already dismissed the Mullen as a load of crap, her agreement made me feel even better. Some kids have splinter skills. Meaning they may lack a skill that should have come at an earlier age, but they have developed other skills that are more advanced. Connor is such a case. He can sit fully independently, maintain a standing position for at least a minute holding the couch, and as of his most recently PT session, he can also maintain a crawling position for a minute (we just gotta get him moving).
We also took the opportunity to have him seen in the Boston TSC clinic. Dr. Sahin looked him over and we did the Woods lamp test for the first time. Skin involvement is common in TSC, but Connor doesn’t have anything particularly noticeable. He did have some small raised white spots on his legs I suspected were TSC related, as well as a tiny white spot without pigment, but nothing I would have thought much of were it not for the TSC diagnosis. Dr. Sahin confirmed the little white bumps were tiny little shagreen patches, and the lamp revealed some other de-pigmented spots not visible to the naked eye. Nothing that really phased us. Perhaps there is a benefit to the possibility of him inheriting my pasty skin rather than Chris’s ability to tan. His white spots will be less noticeable. He also looked over the MRI that was done right before Connor’s surgery. He said he was too young for it to be a great MRI, but he did point out some tubers, and the SEN’s Connor has were very, very small. SEN’s are the brain growths that have the potential to grow and become SEGAs which can be very serious, needing surgery or the drug Afinitor, so it was good to hear his are particularly small. His social area of the brain also looked good. Connor will have his annual clinical MRI with them next time we go in August. We should be able to tell a lot more about what areas are affected then.
Chilling in the Boston suite.
We cut our trip short by a day due to the storm that was supposed to hit. Naturally, that meant the storm ended up being downgraded. You’re welcome, Boston.
Random thought for the day: I think Connor should have been the e-Trade baby.
Back-to-back trips = no blogging for a couple weeks. I’m not one of those travelers that’s motivated enough to lug around a laptop, much less add one more item to the list of things TSA can harass me about. I’m already getting crazy with secret 4-5 oz bottles of*gasp* liquid! On February 26 I caught an early morning flight to DC to join other staff and volunteers of the TS Alliance for training and meetings with representatives and senators. Little did I know that of the four flights I would have over the next couple weeks, this would by far be the best one. It was almost empty and everyone could have their own row. I was traveling with Wendi, and she’s one of those social types that actually engage total strangers in conversation (I’m trying, okay!?). We began talking to a guy that, quite by fluke of another medical issue, had discovered that both his daughters had a health issue related to a faulty gene as well. Theirs is quite different though. I can’t remember what it was called, but basically they are lacking the ability to create an enzyme that creates a protective coating of organs such as the lungs and liver. So although they don’t have any current health issues, the basic drinking and smoking that other people may partake in casually, is a whole different ball game for them. They are at a very high risk for cancer because of this. They are young now, but that’s a lot of pressure as they get older. Those teen and college years are going to be awfully stressful for those parents…
Red velvet, baby!
We arrived at the Melrose Hotel with plenty of time to spare before training, so we went strolling through Georgetown and stopped for lunch, where I categorically deny having any wine. We also happened by DC Cupcakes of reality show fame. Cute cupcakes, but honestly, I think they were from the day before. Apparently the sisters on the show (which I really don’t watch) only come in when they are filming. Oh, the lies of reality television. We all received matching shirts to wear on the Hill which is great for visibility, but bad for the amount of time I spent obsessing over what to wear before I left. I suffered a closet induced mental breakdown for nothing, but whatever. My Jackie O. dress is still a bit tight where my body mistakenly thinks there is still a baby inside. My ribs would have hurt by the end of the day anyway. We rose early to get through security and where I met my favorite government employee of all time. As we prepared to pass through security at the entrance of Cannon, there was a hysterical number of abandoned coffee cups just inside the door on a ledge. Had I had the time, I would have taken a picture. A female security guard walked over, took one look, and it was, “Oh Hell NO! This isn’t a trashcan! Tell those people outside to use the one out there!” Then she stormed off yelling, “This is bullshit!” I should apply for that job because I used to do that when I worked at Barnes & Noble and Starbucks, and I always got in trouble…
We Georgia volunteers managed to meet with the offices of all the representatives but three, Paul Broun and David Scott, as we never got a response to our requests from either office, and Sanford Bishop, who responded, but had no staff available to meet with us. The morning started off great as our very first meeting was in the office of supporter Rep. John Lewis who promised continued support. We had other positive meetings, but this was the only straight up yes on the spot. Of course, given that we were there just before the sequester, these meetings were a little different from what they would usually be. What we should have been doing was asking for them to sign the FY2014 Dear Colleague letter to support tuberous sclerosis research. Problem is, as you probably know, Congress never got around to dealing with 2013. So we were trying to get that through, and let them know that eventually there will be a letter for 2014. You see, the House wrote a bill that funded the Tuberous Sclerosis Complex Research Program last summer, but things came to a stop at the Senate and here we are still awaiting a budget for a year that will probably be over before anything gets done. So thanks to the sequester that went down a couple days later ,there are more cuts…to everything. I could rant here about how this kind of performance in the private sector would lead to mass firing, but other people are far better at discussing politics.
With Georgia representative Tom Price.Just after getting a promise of support.
That evening the Alliance held the Volunteer Awards dinner, my final evening of being introduced to people and pretending not to know who a lot of them were already, as if I haven’t spent the last several months since Connor’s diagnosis stalking everyone online to see how others were faring with TSC. “Oh, hello, nice to meet you!” (In my head: So you’re the mom of so and so, who’s 10 years old, loves soccer, and went as a zombie for Halloween).
Dinner was steak, potatoes and asparagus. Why am I telling you this? It’s significant and will affect the next several days of my life.
Then there were drinks in the lobby, and a trip to a bar across the street.
With Wendi and Reiko, TSC moms and volunteers.With Wendi and Chris Hawkey of the band Rocket Club, emcee for the awards ceremony.
It was a fun evening, but given the nature of the trip I didn’t get too crazy with the drinks. That turned out to be stupid. I might as well have danced on tables for all the good it did me because when I woke up the next morning, I was NOT well. Wendi had an early morning flight, and should be very grateful of it. I spent about an hour or so being “not well”. And then a miraculous recovery! That’s how I roll. I’m never sick for long. So I spent the next few hours before my flight checking out the monuments.
Just cuz I tried to hop the fence for a photo didn’t necessitate a physical assault. Jerks.
Don’t I look healthy here?
I found myself feeling particularly tired after a couple hours, which I chalked up to the fact that I hadn’t gotten much sleep the last couple nights, so I headed to the airport early. This turned out to be the only reason I got home that day. I arrived at Reagan to learn that my flight was cancelled and I could either go standby for the next two (full) flights home, or I could take the shuttle to Baltimore and fly from there. Two other early arrivers were in the same boat. I’m quite grateful to one of them, who is a weekly business traveler and had beat me by only a few minutes. Despite the clear skies and the fact that they had another (full) flight departing 45 minutes after ours, AirTran tried to tell him it was weather related. He called BS on that one, and they finally admitted the plane had mechanical issues. So at least for my irritation I got a free shuttle ride and plane ticket (which will probably be so blacked out I can’t use it). While I appreciate the free ticket as compensation given that I still ended up on a flight that departed roughly the same time, I DO NOT care for them lying. I don’t care if it’s typical of the industry…it’s crap. I also do not care for the fact that I had booked a 2:00 flight, and two weeks earlier I received an e-mail that my flight was cancelled and I was now on the 4:00. I accepted that change–it was fine. But now this, too. And he said, well we sent you an e-mail today. I said, “Yes, you did send me an e-mail today, and it contained my itinerary exactly as it still was. The reference to the cancellation, I thought, was reference to the 2:00.” And I’m not crazy because the business traveler got the same e-mail and didn’t understand the flight was cancelled either. His colleagues that hadn’t arrived yet would later receive e-mails that they could not fly out until the next morning.
At any rate, they paid for a shuttle in which we had to bully the driver into actually taking us. And then when he finally left, he turned around to go back and get someone else despite our protests that we would barely make it as it was. Nonetheless, we did make it. And I thought I was dying the whole way.
Turns out, I wasn’t better after all. But I can’t even claim nausea. It was soooooo much worse. More of a “stomach full of acid eating away at my insides” kind of thing. The TSA lines were thankfully short, just the perfect length in fact, for me to redress, run for the bathroom and retch loudly enough to horrify the entire row of stalls.
Oh my God, it’s Cambodia again. The only time I had ever thrown up on a plane before. Oh please, not again. I can still hear that mean French lady snapping, “Close ze bag! Eet smells!” I rode the wave of post-puke feeling better-ness into feeling hopeful all was well. Until I got on the plane and was seated next to two girls with attitudes that had seemingly never flown before. I mean, I don’t care if you’ve never flown, but I care that you can’t comprehend that the flight attendant has told you three times to shut off your devices and that you refuse to put your purse under the seat because the floor is dirty. I know an omen when I see one. I was so miserable between the bathroom and my seat, that I actually started to cry. The flight attendant was really sweet and gave me a hug. But then I was terrified of letter her know I was sick because she’d think I’d contaminated her, even though I was certain it was food related. Yeah, the ride home in Chris’s car wasn’t much better. But at least he brought plastic bags.
In defense of the hotel, I have to say I don’t know of anyone else getting sick. I thought the hotel was otherwise fantastic.
The wall in my hotel room.
I feel bad if I picked this up elsewhere and I’m blaming them, but timing wise, I just don’t know where else it happened. And they were a little lax with the food I thought, as far as taking a long time to bring things out and letting stuff get cold…so that’s my guess anyway. I would have the pleasure of battling my body all the way to Boston, where I had to fly two days after I returned. But that’s for another entry if you made it this far…if the mention of vomit hasn’t scared you away. Don’t worry. That’s as detailed as it’s getting.
And Stephanie of Lanier Landing, who was the only one I had really never had any social media contact with, but I had stumbled across her blog when seeking other TSC kids in Epidiolex trials. At the time, her son was the only one I knew of.
Mixed Up Mommy 